ORIGINAL RESEARCH

Patients' perceptions of health care-related infections and safety measures

Miriam Cristina Marques da Silva de Paiva^I; Cristiane Helena Gallasch^II; Silvana Andrea Molina Lima^III; Lucy Sitton-Kent^IV; ReenaDevi^V; Andreas Xyrichis^VI

^I Nurse. PhD, State University of São Paulo, Botucatu, São Paulo, Brazil. E-mail: miriampaiva@fmb.unesp.br
^II Nurse. PhD, University of the State of Rio de Janeiro, Brazil. E-mail: cristiane.gallasch@gmail.com
^III Nurse. PhD, State University of São Paulo, Botucatu, São Paulo, Brazil. E-mail: smolina@fmb.unesp.br
^IV Nurse. PhD, University of Nottingham, England. E-mail: lucy.sitton-kent@nottingham.ac.uk
^V Psicologist. PhD, University of Nottingham, England. E-mail: reena.devi@nottingham.ac.uk
^VI Nurse. PhD, King's College London, England. E-mail: andreas.xyrichis@kcl.ac.uk
^VII Funding source: products resulting from a research project with support from the British Academy through the Newton FundMobility Grant.

DOI: http://dx.doi.org/10.12957/reuerj.2017.27468

ABSTRACT

Objectives: to analyze data from qualitative studies of patient perceptions of measures to prevent and control healthcare-related infections and factors that contribute to their own safety. Method: systematic review of publications from 2006 to 2016, followed by thematic synthesis by coding patients' accounts and interpretations of findings given. Results: six themes highlighted barriers to patients' participating actively in promoting their own safety: insufficient information supply; poor comprehension; negative feelings; negative experiences; behavior of health care personnel; and factors that influence patient involvement. Conclusion: the gap between patients' understanding infection prevention and control measures and their becoming involved in the process point to a need for measures to foster effective communication, better care personnel-patient relations, and access to information that encourages patients to interact and contribute to health care.

Keywords: Cross infection; health promotion; patient safety; active patient participation.

INTRODUCTION

Scientific and technological progress have provided valuable resources for diagnosis and treatment of diseases and recovery of health, but various devices and procedures, such as insertion of central and urinary catheters, are often associated with infections and influence care outcomes ¹. The burden of health care-related infections (HCRI) is high in developed countries², but such rates are up to 20 times higher in developing countries, and the proportion of infected patients reaches frequencies above 25³.

In an effort to prevent and control HCRI, researchers have sought to provide and synthesize recommendations on procedures, resources, and management that can serve as guides for the health staff^4,5. However, infection prevention and control (IPC) continue to pose challenges for health systems; innovative researches that promote better care outcomes are still desired¹.

National Patient Safety Programs valuing patients as the center of care and their involvement in safety actions were listed by the World Health Organization among the solutions to improve the process of health care and to contribute to risk reduction and patient safety^6,7.

The participation of patients as promoters of health care changes requires, however, the training of individuals, families and the community, aiming to promote their empowerment and collaboration with health care professionals¹. In this sense, it is necessary to explore the level of understanding of patients about safety measures in HCRI prevention and control to propose and/or promote their participation⁸.

Motivated by the need to know the advances of research on actions to promote the involvement of patients in safety measures for HCRI prevention and control and encouraged by national and international recommendations, the following questions was selected for this: What are the patients' perceptions about HCRI prevention and control and patients' contributions to their own safety in this area? What are the main research findings in this topic?

In this context, the present study aims to analyze qualitative studies about patient perception of prevention and control measures of health care-related infections and factors that contribute to patient safety.

METHODOLOGY

This is a systematic review of qualitative studies. Qualitative researches were chosen because a qualitative approach seeks to explore the way people understand the world around them, who they are, and how they present themselves and respond to others⁹, and these issues are not easily elucidated with an experimental methodology¹⁰. The thematic synthesis described by Thomas and Harden was chosen due to its potential to facilitate the formulation of appropriate and effective policies and practices. In this method, the goal is to preserve an explicit and transparent relationship between the conclusions and the text of primary studies¹¹.

The searches ran from October 2016 to February 2017, using the Virtual Health Library (VHL), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, United States National Library of Medicine (Pubmed), Scopus, and Web of Science. The inclusion criteria used were: articles published between January 1, 2006, and December 31, 2016, in Portuguese, English or Spanish. The exclusion criteria were: articles not available in full length, with exclusively quantitative analysis, repeated publications, and literature reviews. As search strategies, we used the Descriptors in Health Sciences - DeCS and the Medical Subject Headings - MeSH: (Infecção hospitalar AND Pacientes AND Pesquisa qualitativa);Cross infection AND Patients ANDQualitativeresearch; and Infecciónhospitalaria AND Pacientes AND Investigacióncualitativa; and in the CINAHL database, HAI AND Patient AND Perception AND Qualitativeresearch.

For selection of articles, the relevance of the works was analyzed by reading of titles, and then reading the abstracts and/or the full texts. The selected articles were independently assessed by two reviewers before inclusion in the review. Each selected article had the following data collected: title, authors, year of publication, country of study, research team, objectives, participant subjects, methods of data collection and analysis, study site and results. The results of each article were coded line by line and then the relationships between them were identified. Codes with similar meanings were grouped to create a synthesis with categories that converged in broad descriptive themes. This material was critically analyzed and interpreted by the authors, who answered the study question by the abstraction of the themes and presented a synthesis and implications for the development of interventions¹¹.

As this study did not involve humans, the study did not require approval from Research Ethics Committees.

RESULTS

Four hundred and seventy six publications were identified: 121 in the VHL; 161 in CINAHL; 41 in Scopus; 120 in Pubmed; 22 in Web of Science; and 11 in Embase. Ten studies stood out for examining the patients' perceptions about measures related to HRCI after application of pre-established criteria. In order to preserve the context of the studies, an individualized summary is presented in Figure 1.

(*) MRSA: Methicillin-resistant Staphylococcus aureus. (**) MR: multiresistant microorganism. (***) IRHC: Infections related to health care
FIGURE 1: Articles collected in databases on patient perceptions of health care-related infections. 2009/2016.

Two articles deal specifically with HCRI from the point of view of patient involvement as a safety measure^8,12. Seven studies addressed HCRI and multiresistant bacteria. For data collection, most of the studies used semi-structured interviews; one used a focus group with patients; another used a set of methods; and another, observation and video-tapes. As for method of analysis, six articles used content analysis ^13-17,19, two used thematic analysis^12,18, one study used inductive analysis⁸, and one performed reflective video ethnography²⁰.

Six themes emerged from the texts analyzed, revealing the patients' perceptions about prevention and control of HCRI (PCH) implying factors that influence the involvement and contribution of patients to their own safety.

Theme 1: Insufficient information provided

In the studies, the patients' perception about the poor supply of information about HCRI in health services in terms of quantity, quality and means of disclosure was highlighted in the studies. Moreover, the information provided was qualified as non-specific, superficial, inadequate and discordant. The communication between health professionals (HP) and patients was flawed, either verbally or due to the absence of printed material or other means^13-20. The aspects highlighted in the papers were lack of information about the health situation of the patient, when there is infection^13,16-18; concepts in the theme of infection and types of bacteria^13,16,18; modes of transmission; and PCM measures^14,17,19,20. Although some patients had been informed about the reason for the measures adopted, they expressed the desire for additional information^15-17, including written guidelines^19,20

Theme 2: difficulty to understand instructions on PCM

A convergence of limited understanding about PCM measures was observed ^16,18-20. The studies reveal that some patients feel confused and have incorrect concepts or ideas regarding the origin of the infection^17,18, the modes of transmission and the use of paramentation ^16,20 that are dissociated from preventive measures. The causes of the difficult understanding identified were: personal, physical, emotional and psychological factors related to the baseline condition and insufficient knowledge of care practices; interpersonal factors such as communication problems between professionals and patients and the inadequate moment to receive guidelines; and cultural factors: marginalization of patients by professionals and resistance for allowing them to share in the process²⁰.

It was observed that the excess of guidelines disclosed at the same time hampered the retention of information¹⁷. It was not clear whether patients did not remember the information or whether the information had not been provided¹⁹. The experience of previous HCRI seemed to favor awareness and understanding of means of transmission and risks to patients^12,20.

Theme 3: Negative feelings toward HCRI

Negative feelings prevailed in the experiences of the study patients. Admission to the isolation room was solitary, worrying, limiting and violent¹³. The feeling of discrimination, particularly on the part of health care professionals, was observed in the case of delay to respond the patients' requests without reasonable justification ¹³. The manifested fear and insecurity referred to different aspects such as: diagnosis¹⁶, prognosis¹², use of personal protection equipment (PPE)^16,17, fear of the bacteria ¹⁷ and fear of transmitting the infection to family members and others¹⁶. Guilt and shame emerged in relation to partners and about the possibility of having contaminated others^15,17. Some patients with multidrug resistant bacteria rejected the responsibility of informing the health services that they were carriers of the infection ¹⁷.

Theme 4: Experiences for understanding IRAS and measures for PCH

Different levels of knowledge about PCH were recorded in the studies analyzed. Insufficient numbers of bathrooms and showers and dirt on their floor were mentioned as modes of transmission/contamination of HCRI in health services^12,16. It was mentioned that the patients themselves and their attitudes toward hygiene were responsible for HCRI ¹². Fomites, direct contact, care procedures, and professionals recruited in banks of employees for eventual work were also mentioned. Some patients saw infections as unavoidable in the hospital environment¹⁸.

Gloves and aprons stood out as measure of PCH in care provision by professionals^16,20. The use of PPE in waiting rooms and common areas was poorly understood among patients^17,20, but isolation and treatment of infections, as well as surveillance and prevalence studies are accepted for PCH²⁰.

During an activity of reflection on material related to PCH, patients were able to re-think their own hygiene habits, and they perceived potential sites of accumulation of contaminants and problems with cleaning. In order to better understand HCRI and PCH measures, patients cited strategies such as Internet searches, conversations with other patients and attention to parallel educational activities among teachers and students within the care environment²⁰.

Theme 5: Perception of inadequate professional attitudes

Some patients rely on practices developed by professionals in health services^18-20, believing that they will do what must be done and that they are well trained^12,18. However, instead of professional behaviors, inadequate attitude were perceived¹³: inadequate support and follow-up^14,17, flaws in hygiene and asepsis during care¹⁶, adoption of different behaviors depending on the situation¹⁷ or when there was a hurry¹². Non-adherence of physicians to PCH measures caused confusion about correct practices²⁰.

Topic 6: Aspects that influence involvement in care

Some patients regard health recovery as a priority and/or believe that it is the responsibility of the team to prevent infections and that they do not have a role to play in PCH^12,20. Other patients link infections with factors such as: severity of the disease, type of hospital and doubt about being heard⁸.

Although they denied their contribution, in one study the patients discussed activities such as washing their hands regularly, maintaining personal hygiene, participating in infection surveillance activities, reporting inappropriate PCH measures, following rules, and maintaining clean and organized their bed and space²⁰. Furthermore, they were willing to learn more about infection^17,19 and to collaborate by following guidelines¹². Guidance to families and visitors was considered a necessary practice in hospital routines ¹⁶ promoting greater participation in PCH measures related to health care¹².

The studies showed that most patients feel comfortable asking questions about HCRI for the team. They believe they have the right to ask professionals to wash their hands or cover their mouths when sneezing/coughing, although they recognize a difficulty in approaching professionals of the opposite gender, elderly people and physicians ^12-18. Other patients revealed that they would never question the behavior of the professionals because of shame or fear of being reprimanded, to avoid offending the professional or dreading consequences ^8,12,18,20. Young professionals, mainly nurses, are perceived as more accessible and interested in interacting¹².

DISCUSSION

The central role of patients in their own health care safety has been highlighted in worldwide campaigns⁶, but studies dealing with patients' perceptions about their possible contribution to PCH are rare. A considerable part of the studies discusses bacterial multiresistance and/or experiences of isolation^13-17.

Access to information emerged in researches as a relevant problem for patients, either due to lack of educational resources or due to the professional-patient relationship that seemed to alienate the involved persons. The themes "HCRI" and "safety measures for PCH" were complex to understand, and obscured by the conditions in which the patients were. Thus, the challenge is to find ways to change this reality, it is essential that every party be involved to promote safety culture and reduce HCRI ¹². The implementation of interventionist actions, changing the paradigm of the passive role attributed to patients into active participation in the health care process, in favor of best practices, is an urgent need.

The texts portrayed the feelings of people affected by HCRI, namely, fear, shame, guilt and discrimination interpreted as insecurity before the unknown and associated, in part, with the impossibility of knowing the mechanisms of transmission and where, how and when they were contaminated^14,17. Keeping patients alienated in relation to their health condition can generate distortions in the social representation they have of themselves and of the environment in which they are inserted, interfering in their understanding of the problem and of their actions¹⁶. In this sense, studies found that health professionals had less contact and spent less time with patients who were in isolation^15,21.

The professional-patient relationship was considered offensive when the professional identified the patient as acarrier of multiresistant microorganism or contagious person¹⁷. Inappropriate interactions can influence the patients' experiences with health care because they feel stigmatized, feel uncomfortable to talk to professionals and they do this contact only if absolutely necessary¹⁴. It is believed that good communication improves patients' knowledge and trust in the team and approximates them^18,22. It is therefore important that professionals have not only knowledge about infections and PCH practices, but also empathic abilities to act respectfully and meet the patients' expectations¹⁷. Having sensibility to identify the patients' limitations/needs is essential to develop flexibility and educational interventions to help them¹⁹.

The goal should be to allow patients to understand the infection, both for the sake of their well-being and to increase their understanding of the risk of transmission/contagion. It is imperative to manage HCRI so as to avoid dissemination of the infectious agent, but also to control behaviors and attitudes of professionals that contribute to the stigmatization of patients¹⁷.

Patients' perceptions must be channeled appropriately within the organization. Their participation should be welcomed both in deciding and evaluating changes in health systems and information with the aim of improving reliability and safety, bringing direct benefits to all^8,18.

This study verified that a significant part of the patients of the researches did not receive any sort of information about HCRI and they often considered it difficult to obtain it from HP. Some patients even regard HCRI as unavoidable, which was possibly endorsed by professionals ¹⁸. They mentioned dirt, lack of hygiene, fomites and procedures, among others, as potential factors that contribute to the transmission of microorganisms (MO)^12,16,18. The use of PPE does not always have its role understood, and transmits the idea of a discriminatory measure and incites doubts among patients^17,20. The patients' own perceptions and attitudes regarding hygiene were considered as responsible for the transmission of MO, more so than other actors involved, such as the professionals¹².

In view of the incontrovertible deficiency of provision of information to patients revealed in the research, it is clear that patients were left to understand the infections' nature and their means of transmission based on the interpretation of their experiences^12,18. Despite the evident superficiality of the information on PCH measures, the patients recognized inadequate behaviors adopted by professionals during care^{12,13,16,17,20} causing doubts about correct practices^20,23.

The low adherence of health professionals to guidelines on precautions for PCH is a known problem and a constant challenge²⁴. It should be emphasized that professionals should be committed to knowing patients with infection, particularly those with multiresistant MO, and PCH measures, factors that will bring safety to the team, patients and families, minimizing negative feelings and outcomes. Equally important is the responsibility of each professional to strictly observe the adoption of best practices at all momentos during care provision^13,16.

The authority of the health care team is striking and some patients feel uncomfortable to question the decisions or actions of their caregivers for fear of being labeled a "difficult patients" and/or offending a practitioner with their concerns about safety and health care¹⁸. The professional hierarchy and patient-employee relationships are especially important in determining patients safety and attitudes^12,25. Patients also face cultural marginalization, being ignored or challenged when they express doubts about the practice or when they verbalize their preferences. The ability of patients and their families to contribute to safety is strongly shaped by the relationship with team members.

It was mentioned that the use of audiovisual methods had a transformative impact for the understanding of PCH²⁰. In practice, hospitals need to consider introducing mechanisms to fill the identified gaps and minimize barriers to patients' participation in order to maximize the benefits of infection prevention, which can be obtained with training programs.

It is known that health education for patients reduces mortality rates and promotes improvements in quality of life in different contexts^26,27. The particularity of training patients should be the respect for the unique and valuable perspectives of the patients. These programs must seek to break up with the paradigm where only health professionals play a role in the prevention of HCRI and emphasize that the patients are the only persons present in all phases of their care, having an active role to play in favor of their safety. In addition, it is suggested to monitor the progress, using indicators of the need for patients' involvement, to be developed and implemented¹².

CONCLUSION

The involvement and participation of patients in the measures of prevention and control of HCRI represent a path to be followed with the goal to advance safety in health care. It was identified that the patients' perceptions are usually negative and indicate factors that make it difficult to reach the goal and they include the provision of insufficient or inadequate information, the difficulty to understand PCH, the predominance of unfavorable feelings and experiences and the behavior of HP. These factors contribute to the patients' passive participation in their own safety.

The gap between the understanding of PCH by patients and their involvement in the process indicates the need for strong actions to favor effective communication, better health-patient professional relationships and ease of access to timely provision of information that will enable and encourage interaction and contribute to safer care.

It is understood, therefore, that this review gathered evidence on how patients perceive PCH and report their experiences, reinterpreting the technical knowledge. The results are important because they added useful and relevant information that provide the conditions for HP to reflect on the emerging aspects that form the basis for researches exploring methodologies with potential to promote changes so as to actively integrate patients in order to reduce health care risks.

REFERENCES

1.Centers for Disease Control and Prevention. Types of Healthcare-Associated Infections [site de Internet]. Atlanta: CDC; 2014 [cited in March 7, 2016]. Available from: http://www.cdc.gov/HAI/infectionTypes.html

2.Pittet D, Allegranzi B, Storr J, BagheriNejad S, Dziekan G,Leotsakos A,et al.Infection control as a major World Health Organization priority for developing countries. J. Hosp. Infect. 2008; 68(4): 285-92.

3.Allegranzi B, BagheriNejad S, Combescure C, Graafmans W, Attar H, Donaldson L, et al. Burden of endemic health-care-associated infection in developing countries: systematic review and meta-analysis. Lancet. 2011; 377(9761):228-41.

4.Zingg W, Holmes A, Dettenkofer M, Goetting T, Secci F, Clack L, et al. Hospital organisation, management, and structure for prevention of health-care-associated infection: a systematic review and expert consensus. Lancet Infect Dis. 2015;15(2):212–24.

5.Flanagan ME, Welsh CA, Kiess C, Hoke S, Doebbeling BN. Agency for Healthcare Research and Quality Hospital-Acquired Infections Collaborative. A national collaborative for reducing health care-associated infections: Current initiatives, challenges, and opportunities. Am. J. Infect. Control. 2011; 39(8): 685-9.

6.World Health Organization. Patients for patient safety what's new? [site de Internet]. Geneva: WHO; 2016 [cited in March 10, 2016]. Available from: http://www.who.int/patientsafety/patients_for_patient/en/

7. Ministry of Health (BR). Ordinance nº 529 of April 1, 2013. Establishes the National Patient Safety Program (PNSP) [Internet site]. Brasília: MS; 2013 [cited in March 10, 2016]. Available from: http://bvsms.saude.gov.br/bvs/saudelegis/gm/2013/prt0529_01_04_2013.html

8.Ahmad R, Iwami M, Castro-Sánchez E, Husson F, Taiyari K, Zingg W, et al. Defining the user role in infection control. Journal of Hospital Infection 2016; 92:321-7.

9.Flemming K, Briggs M. Electronic Searching to locate qualitative research: evaluation of three strategies. J. Adv. Nurs. 2007; 57(1):95-100.

10.Green J, Britten N. Qualitative research and evidence based medicine. BMJ. 1998; 316(7139):1230-2.

11.Thomas J, Harden A. Methods for thematic synthesis of qualitative research in systematic reviews. London: ESRC National Centre for Research Methods.2008; (NCRM Working Paper Series; 10/07). doi: 10.1186/1471-2288-8-45.

12.Seale H, Travaglia JF, Chughtai AA, Phillipson L, Novytska Y, Kaur R. 'I don't want to cause any trouble': the attitudes of hospital patients towards patient empowerment strategies to reduce healthcare-acquired infections. J. Infect. Prevent. 2015; 16(4): 167-73.

13.Skyman E, Sjöström HT, Hellström L. Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated. Scand J. Caring. Sci. 2010; 24(1):101-7.

14. Lindberg M, Carlsson M, Skytt B. MRSA-colonized persons' and healthcare personnel's experiences of patient–professional interactions in and responsibilities for infection prevention in Sweden. J. Infect. Public. Health. 2014; 7(5):427-35.

15.Lupión-Mendoza C, Antúnez-Domínguez MJ, González-Fernández C, Romero-Brioso C, Rodriguez-Bano J. Effects of isolation on patients and staff. Am. J. Infect. Control. 2015;43(4):397-9.

16.Santos HG, Santos CIL, Lopes DFM, Belei R. Bacterial multiresistance: the experience of patients hospitalized in a school hospital in the city of Londrina-PR. Cienc. Cuid. Saude. 2010;9(1):74-80.

17.Lindberg M, Carlsson M, Högman M, Skytt B. Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonization. J. Hosp. Infect. 2009; 73(3):271-7.

18.Burnett E, Lee K, Rushmer R, Ellis M, Noble M, Davey P. Healthcare-associated infection and the patient experience: a qualitative study using patient interviews. J. Hosp. Infect. 2010; 74(1):42-7.

19.Hill JN, Evans CT, Cameron KA, Rogers TJ, Risa K, Kellie S, et al. Patient and provider perspectives on methicillin-resistant Staphylococcus aureus: a qualitative assessment of knowledge, beliefs, and behavior. J. Spinal Cord. Med. 2013;36(2):82-90.

20.Wyer M, Jackson D, Iedema R, Hor SY, Gilbert GL, Jorm C, et al. Involving patients in understanding hospital infection control using visual methods. J. Clin. Nurs. 2015; 24(11-12):1718-29.

21.Abad C, Fearday A, Safdar N. Adverse effects of isolation in hospitalized patients: a systematic review. J. Hosp. Infect. 2010; 76(2):97-102.

22.Rees J, Davies H, Birchall C, Price J. Psychological effects of isolation nursing (2): patient satisfaction. Nurs. Stand. 2000;14(29):32-6.

23.Pittet D, Panesar SS, Wilson K, Longtin Y, Morris T, Allan V, et al. Involving the patient to ask about hospital hand hygiene: a National Patient Safety Agency feasibility study. J. Hosp. Infect. 2011; 77(4):299–303.

24.Backman C, Marck PB, Krogman N, Taylor G, Sales A, Bonten MJ, et al. Barriers and bridges to infection prevention and control: results of a qualitative case study of a Netherlands' surgical unit. BMJ Open. 2012; 2:e000511. doi:10.1136/bmjopen-2011-00051.

25.Doherty C, Stavropoulou C. Patients' willingness and ability to participate actively in the reduction of clinical errors: a systematic literature review. Soc. Sci. Med. 2012; 75(2):257–63.

26.Vasconcelos SC, Frazão IS, Vasconcelos EMR, Cavalcanti AMTS, Monteiro EMLM, Ramos VP. Self-care demands in a therapeutic group: health education with users of psychoactive substances. Rev. enferm. UERJ. 2013; 21(1):79-83.

27.Gonçalves FG, Albuquerque DC. Health education of patients with heart failure. Rev. enferm. UERJ. 2014; 22(3):422-8.